Last night was a late night out for my blushing bride and I. We whooped it up and this morning the kiddos are already well ahead of us. Today is Sydney's last day of kindergarten. It will be capped off by a graduation ceremony this evening at 5:00 PM. While part of me thinks it is absolutely ridiculous for kindergartners to have a graduation ceremony with cap and gown, I have to admit that the milestone strikes me especially hard. I am amazed at how far she has come. I have always known the odds of her achieving this milestone where especially slim and I am truly grateful for the gift. Not only am I thankful for the journey of getting to this point in her life but I also so appreciative of all that she has accomplished. I feel confident to say that Sydney has been able to accomplish everything that is expected of an ordinary kindergartner. In fact, in many areas she has not only met the challenge but has greatly surpassed the standard. It is for these reasons that I am so tremendously proud. For a child that has spent 4 of the last 5 years in treatment, endured 9 high dose rounds of chemotherapy, a stem cell transplant, almost 1 full month of radiation, a year of oral chemotherapy, over 2 and a half years of painful immunotherapy and travel back and forth to a different city for treatment; the fact that she has met the challenge of completing kindergarten pales in comparison. However, it is the fact that she did it and that she did it on time that amazes me. Today the celebration for many will be about a single year - for me it will be for a lifetime.
So, while I still think it is somewhat ridiculous to have a cap and gown ceremony for the graduation of kindergarten I am still especially mindful of the incredible journey Sydney has made. No one will be prouder.
Now that is purpose!
Thursday, May 29, 2008
Wednesday, May 28, 2008
All shook out.
The Purple Cow Shake-a-thon was a success. I want to thank everyone for coming out in support. It really does make a difference. I have not received the final tallies but I do know that before we even started we had already raised as much as we did the previous year. So the good news is: the only place we could go was up. I am so thankful to all of our friends and supporters. I had the opportunity to sit down and talk with many of you but I know that there were many I missed. I just want you to know how appreciative I am. Although it was only lunch or dinner (or for some of you lunch and dinner) Lynley and I know how many of you come out and support us at these events. We know that neuroblastoma research does not have to be your purpose but are genuinely touched would you chose to help us make a stand. Thank you.
Ainsley was also thankful that there were so many people at her birthday party. We did not bother telling her that it was not entirely about her. Unfortunately, the kid's all melted down a little bit early. If you ever wondered what the consequences might be if you started giving your 3, 4, and 6 year olds ice cream as an afternoon snack I think we have proven that it is not a very good idea. By 6:30 PM the rugrats were absolutely wasted and displaying a whole new level of ornery. I am beginning to think that sugar is kind of like alcohol. Some kiddos can handle their sugar and others, like Ainsley and Sydney, can not. They are sloppy sugar drunks that tend towards violence whereas Graham could not be more giggly. I guess you could call him a happy drunk. He will just keep giggling until he passes out.
Well, I had best be off again. I just wanted to take this opportunity to thank everyone. Today is another busy day in a seemingly unending barrage of events. Once we get through this week I am hopeful that we will be able to stop and smell the roses and to breathe a bit.
There is a continuous flow of purpose.
Ainsley was also thankful that there were so many people at her birthday party. We did not bother telling her that it was not entirely about her. Unfortunately, the kid's all melted down a little bit early. If you ever wondered what the consequences might be if you started giving your 3, 4, and 6 year olds ice cream as an afternoon snack I think we have proven that it is not a very good idea. By 6:30 PM the rugrats were absolutely wasted and displaying a whole new level of ornery. I am beginning to think that sugar is kind of like alcohol. Some kiddos can handle their sugar and others, like Ainsley and Sydney, can not. They are sloppy sugar drunks that tend towards violence whereas Graham could not be more giggly. I guess you could call him a happy drunk. He will just keep giggling until he passes out.
Well, I had best be off again. I just wanted to take this opportunity to thank everyone. Today is another busy day in a seemingly unending barrage of events. Once we get through this week I am hopeful that we will be able to stop and smell the roses and to breathe a bit.
There is a continuous flow of purpose.
Tuesday, May 27, 2008
Home again!
Well, here I am - home again! Last week seemed like it went by in a flash but, to be honest, it did not go by quickly enough for me to see my kiddos. It is very nice to be home. My mind is still digesting all that I have seen and heard over the last week. It was an extremely productive meeting and I hope to share much of what I learned over the coming weeks. Today, however, is chock full of other activities.
For starters, today is Ainsley's 3rd birthday. Nothing gets much more important than that. We had a birthday party for her last night here at the house but in true Dungan fashion she will be spreading her celebrations out over a week. Today she will celebrate at the school and then tonight at the Purple Cow Shake-a-thon. Next weekend she will have yet another birthday party with some of her friends. I can already begin to see that this one is going to be my party animal. She is starting at such a very young age.
So, today is the official Lunch for Life Purple Cow Shake-a-thon. If you have a chance, please come on out for a good time. Believe it or not, coming out to lunch or dinner at the Purple Cow really does make a huge difference. Remember, lunch or dinner, it does not matter - just be there!
Oh, and don't forget, don't tell Ainsley it isn't for her birthday. Somehow she is under the impression that it is another party just for her.
Yes, she is a little full of herself. But, it will still make for a great party.
Today everyone gets a scoopful of purpose.
For starters, today is Ainsley's 3rd birthday. Nothing gets much more important than that. We had a birthday party for her last night here at the house but in true Dungan fashion she will be spreading her celebrations out over a week. Today she will celebrate at the school and then tonight at the Purple Cow Shake-a-thon. Next weekend she will have yet another birthday party with some of her friends. I can already begin to see that this one is going to be my party animal. She is starting at such a very young age.
So, today is the official Lunch for Life Purple Cow Shake-a-thon. If you have a chance, please come on out for a good time. Believe it or not, coming out to lunch or dinner at the Purple Cow really does make a huge difference. Remember, lunch or dinner, it does not matter - just be there!
Oh, and don't forget, don't tell Ainsley it isn't for her birthday. Somehow she is under the impression that it is another party just for her.
Yes, she is a little full of herself. But, it will still make for a great party.
Today everyone gets a scoopful of purpose.
Friday, May 23, 2008
Purple Cow Shakethon Reminder!
Please remember to help support neuroblastoma research by visiting your Fort Worth, Dallas, or Plano Purple Cow restaurant between 11:00 AM and 9:00 PM on Tuesday, May 27th, 2008. Tell them you are there for Lunch for Life and they will donate a portion of your check to Lunch for Life. Invite your friends. Bring your office. There are wonderful opportunities to also win prizes and help one of our local schools - simply by eating lunch or dinner. It does not get easier than this.
If you ever wondered how you could help a family with neuroblastoma. This is exactly how. Please come share our purpose.
If you ever wondered how you could help a family with neuroblastoma. This is exactly how. Please come share our purpose.
Thursday, May 22, 2008
Absolute submersion - I am drowning in information
Wow, I am exhausted! The ANR is absolutely incredible. It has had me so jam packed with activity that I have literally not had a moment to steal away and write in my diary. Even my hours late at night and the wee ones in the morning are stolen as my mind, which should be sleeping is instead racing with facts and figures. Although I was incredibly tired, I recall being awake most of the night as my mine plotted, planned, and absorbed. I only hope that today I am able to focus and take in as much as I would like to.
Yesterday was as full as I had said it would be. For me, the morning was the most difficult way to start. The plenary session was all basic science and the oral presentations that would follow would all be the same. It was interesting and meaningful but requires intense concentration (for me at least) It is hard to describe the presentations to someone that has not witnessed them before. The best way that I can describe it is a continuous infusion of acronyms intermixed with a steady barrage of complex terms like upregulated, suppresssion, homozygosity, replication, validation, pre-amplification, multivariate, resequencing, penetrance, putative, and abrogated; but to name a few. I find myself straining to ensure that I walk out of the discussion with my grasp on the correct interpretation of each nugget of information. The basic science is where we get our first insight and clues into every aspect of neuroblastoma research. This is how we understand how cells communicate, how genes influence behaviors and, most importantly, how we interpret it for application into the bigger picture of how we can begin to start saving children. The morning was filled with new ideas on how cells die and how we may take advantage of newly discovered genes and receptors to hopefully put an end to this horrible disease. I could go into detail but I fear at this point we would all be bored.
Lunch was quite ironic. I sat next to two researchers from the NCI. It was ironic in that I was sitting next to Amy McKee who gave an excellent educational lecture the day before on the neuroblastoma stem cell. It was more ironic that I was so entirely intrigued by the the body of research that she had completed. It was further ironic that I was so incredibly impressed with the findings of her study. The study was one of many which we had decided not to fund the year before. It was not that we did not want to but the there was a limitation of funds available and a talented pool of competition. I wish we would have been able to fund her work but I was so happy that she did find the funds. Regardless, we both found it rather funny and it was nice to meet face to face. I can ensure you that this is one brilliant junior investigator with an incredible mind. I truly believe she will be a large part of the future of neuroblastoma. And I can tell you that I will certainly look for ways to support her work in the future.
The afternoon is when everything really started to come alive for me. I can think of several new revelations for treatment and research but more importantly whole new themes really began to emerge. There are incredible plans. It all began with what everyone will most assuredly think on the surface is a huge waste of resources and time but, after further insight, will come to see the incredible step it was for us as parents of children with neuroblastoma. The lecture was on the new International Neuroblastoma Risk Group (INRG) classification system. This is the system that dictates what type of therapy your child receives for their disease. I.e. - is your child stage I, II, III, IV. Are you low risk, intermediate, high, or ultra high risk. I know, many of you are thinking - "Mark, you have got to be kidding me. My child is stage IV - high risk. Who cares about the difference between Stage I and II or III and IVs? 40% of kids are high risk and most are dying. Why are we wasting time and resources discussing these semantics? How can this be important?" Well here is why! We are doing it because the entire world is agreeing to use a system which actually includes 17 different classifications. This means that we will not only be able to stratify risk more specifically but that we will be able to compare patients across the world - something we have never been able to do before. In the past every one classified kids differently. This was dependant upon which country you were treated in, which system you were apart of and many other factors. This made large international comparisons murky and downright impossible to evaluate one study for high risk kids in Europe to a study in the US, or one from Australia to one in Asia. In other words, a higher percentage of kids may be surviving from a high risk study in Japan than in another one in the US but it may have been due to the fact that the study in Japan included kids with a lower risk than those it the US. Maybe, and probably, more kids were surviving because they were more likely to survive in the first place. Traditionally, everyone has had to repeat studies and work to see how trials and research questions affected their own risk groups. This new collaboration creates a new world order, one in which kids from across the world can be compared directly. Answers can now be found with one study and comparisons made internationally. This opens the world up to tremendous opportunities for collaboration and means that we can answer questions 10 times faster. It goes beyond just this finding. There are now rules for imaging and molecular diagnostics so that everyone is on the same playing field. Furthermore genetic aberrations are now directly comparable and our risk system will be defined by these instead of age and location of the disease. Much more quickly we will be able to stratify risk groups by internationlly recognized genetic markers. Hopefully we will stratify children by a new set of risk categories that can actually separate the kids by the targeted therapies that they need. In other words, stage IV Johnny will receive a high risk treatment protocol that is tailored to kids with disease that have the same genetic characteristics as his own. In the future we will be able to keep kids from being exposed to drugs and toxic therapies that we will know beforehand will not work on their disease. I.e. no Cisplatin for you. You have loss of 1p36. Your tumor won't respond. We have found kids that have a loss of 1p36 do better on this regimen which includes Topotecan. You see, simply be stratifying kids and collecting information on a global basis we will be able to compare what we never have been able to before. And, in much greater numbers. We will be able to tailor specific treatments at the specific disease characteristics that many of our children share. Haven't you always wanted to know whether a drug worked on a child that was like your own? This system will get us there!
Wow, that was a lot to get out and I have not even gotten past the first 30 minutes following lunch. I haven't even skimmed the bulk of what I learned yesterday afternoon about the stuff that I know will excite so many. The rest of the afternoon was poster presentations and our favorite, translational research - turning all of this basic science into applicable treatments for our children. Yes, bringing all of these medical findings to our kids in the beds- applying the science. To be honest, I could write 100 pages and not even skim the surface of what I saw yesterday. It will not come out this morning. It will take days and weeks of writing and processing. Hopefully later I will be able to go into detail on some of the most exciting discoveries that we saw. There were many. It is incredible. Today we learn if a complete resection really matters and delve into the science of so many burgeoning new treatments. I am excited. Can you tell?
This is purpose overload.
Yesterday was as full as I had said it would be. For me, the morning was the most difficult way to start. The plenary session was all basic science and the oral presentations that would follow would all be the same. It was interesting and meaningful but requires intense concentration (for me at least) It is hard to describe the presentations to someone that has not witnessed them before. The best way that I can describe it is a continuous infusion of acronyms intermixed with a steady barrage of complex terms like upregulated, suppresssion, homozygosity, replication, validation, pre-amplification, multivariate, resequencing, penetrance, putative, and abrogated; but to name a few. I find myself straining to ensure that I walk out of the discussion with my grasp on the correct interpretation of each nugget of information. The basic science is where we get our first insight and clues into every aspect of neuroblastoma research. This is how we understand how cells communicate, how genes influence behaviors and, most importantly, how we interpret it for application into the bigger picture of how we can begin to start saving children. The morning was filled with new ideas on how cells die and how we may take advantage of newly discovered genes and receptors to hopefully put an end to this horrible disease. I could go into detail but I fear at this point we would all be bored.
Lunch was quite ironic. I sat next to two researchers from the NCI. It was ironic in that I was sitting next to Amy McKee who gave an excellent educational lecture the day before on the neuroblastoma stem cell. It was more ironic that I was so entirely intrigued by the the body of research that she had completed. It was further ironic that I was so incredibly impressed with the findings of her study. The study was one of many which we had decided not to fund the year before. It was not that we did not want to but the there was a limitation of funds available and a talented pool of competition. I wish we would have been able to fund her work but I was so happy that she did find the funds. Regardless, we both found it rather funny and it was nice to meet face to face. I can ensure you that this is one brilliant junior investigator with an incredible mind. I truly believe she will be a large part of the future of neuroblastoma. And I can tell you that I will certainly look for ways to support her work in the future.
The afternoon is when everything really started to come alive for me. I can think of several new revelations for treatment and research but more importantly whole new themes really began to emerge. There are incredible plans. It all began with what everyone will most assuredly think on the surface is a huge waste of resources and time but, after further insight, will come to see the incredible step it was for us as parents of children with neuroblastoma. The lecture was on the new International Neuroblastoma Risk Group (INRG) classification system. This is the system that dictates what type of therapy your child receives for their disease. I.e. - is your child stage I, II, III, IV. Are you low risk, intermediate, high, or ultra high risk. I know, many of you are thinking - "Mark, you have got to be kidding me. My child is stage IV - high risk. Who cares about the difference between Stage I and II or III and IVs? 40% of kids are high risk and most are dying. Why are we wasting time and resources discussing these semantics? How can this be important?" Well here is why! We are doing it because the entire world is agreeing to use a system which actually includes 17 different classifications. This means that we will not only be able to stratify risk more specifically but that we will be able to compare patients across the world - something we have never been able to do before. In the past every one classified kids differently. This was dependant upon which country you were treated in, which system you were apart of and many other factors. This made large international comparisons murky and downright impossible to evaluate one study for high risk kids in Europe to a study in the US, or one from Australia to one in Asia. In other words, a higher percentage of kids may be surviving from a high risk study in Japan than in another one in the US but it may have been due to the fact that the study in Japan included kids with a lower risk than those it the US. Maybe, and probably, more kids were surviving because they were more likely to survive in the first place. Traditionally, everyone has had to repeat studies and work to see how trials and research questions affected their own risk groups. This new collaboration creates a new world order, one in which kids from across the world can be compared directly. Answers can now be found with one study and comparisons made internationally. This opens the world up to tremendous opportunities for collaboration and means that we can answer questions 10 times faster. It goes beyond just this finding. There are now rules for imaging and molecular diagnostics so that everyone is on the same playing field. Furthermore genetic aberrations are now directly comparable and our risk system will be defined by these instead of age and location of the disease. Much more quickly we will be able to stratify risk groups by internationlly recognized genetic markers. Hopefully we will stratify children by a new set of risk categories that can actually separate the kids by the targeted therapies that they need. In other words, stage IV Johnny will receive a high risk treatment protocol that is tailored to kids with disease that have the same genetic characteristics as his own. In the future we will be able to keep kids from being exposed to drugs and toxic therapies that we will know beforehand will not work on their disease. I.e. no Cisplatin for you. You have loss of 1p36. Your tumor won't respond. We have found kids that have a loss of 1p36 do better on this regimen which includes Topotecan. You see, simply be stratifying kids and collecting information on a global basis we will be able to compare what we never have been able to before. And, in much greater numbers. We will be able to tailor specific treatments at the specific disease characteristics that many of our children share. Haven't you always wanted to know whether a drug worked on a child that was like your own? This system will get us there!
Wow, that was a lot to get out and I have not even gotten past the first 30 minutes following lunch. I haven't even skimmed the bulk of what I learned yesterday afternoon about the stuff that I know will excite so many. The rest of the afternoon was poster presentations and our favorite, translational research - turning all of this basic science into applicable treatments for our children. Yes, bringing all of these medical findings to our kids in the beds- applying the science. To be honest, I could write 100 pages and not even skim the surface of what I saw yesterday. It will not come out this morning. It will take days and weeks of writing and processing. Hopefully later I will be able to go into detail on some of the most exciting discoveries that we saw. There were many. It is incredible. Today we learn if a complete resection really matters and delve into the science of so many burgeoning new treatments. I am excited. Can you tell?
This is purpose overload.
Wednesday, May 21, 2008
The Neuroblastoma Stem Cell?
Well, for those of you interested in hearing clever Sydney, Graham, and Ainsley stories you are probably going to be terribly disappointed this week. However, if you are interested in the absolute cutting edge of neuroblastoma research or the adventures of little David then this is going to be right up your alley. I am hoping to give other parents and families a good overview of the research that I am seeing. You certainly won't hear it all. There is simply too much. In fact, if I participate in everything that I physically can I will still only be able to see about half of the presentations. In other words, there is a ton that is happening concurrently.
I guess the best place to start is with where I am. The convention is being held at the Makuhari Messe International Conference Hall in Chiba, Japan. It is probably the largest convention center that I have eve witnessed. There are about 15 conference halls in 3 different buildings. Each of this buildings dwarfs the professional baseball stadium next door - by about 5 times. I have not heard the numbers yet but I assume that there are probably greater than about 500 people participating. Sitting in the lobby I saw the faces of all of those people that we have seen gracing the top of just about every neuroblastoma medical article ever written. Sure, I have seen all of the usual suspects from the states - Maris, Cohn, Matthay, Seeger, Reynolds, Twist, Parks (to name a few) - but I am also seeing many of the international names as well. The truly neat thing about this conference compared to the one that I attended in Los Angeles two years ago is the number of foreign investigators. There is a much larger population of foreign researchers at this conference. I think this is very important because we get to see much of the research - in action - that we were not aware of in the states. This means many more opportunities for collaboration and new connections. Frankly, that is what excites me. You see, the North American group is pretty tight nit and even they do not know all of what is happening in a similar lab across the state - much less the country. Now look at the rest of the world. With language and physical barriers it is rare that this group gets to meet, discuss and, hopefully, have revelations together.
So, this afternoon I sit in a workshop on "The Neuroblastoma Stem Cell?" (3 hours worth). This workshop is aimed at presenting all of the work that has been done on neuroblastoma stem cells all over the world to try and discover what we really know. Do they exist? Does it matter if we do? What do we know that we can take advantage of?
David Kaplin from Sick Kids in Toronto has given the overview. The reason that everyone thinks neuroblastoma stem cells are so important is because of the whole theory of how neuroblastoma tumor cells come to be, grow, and more importantly - how they die.. What they have discovered is that there are indeed tumor initiating cells. This subset of cells is really good at growing neuroblastoma. Believe it or not - many neuroblastoma cells don't have this characteristic. While there are a lot of neuroblastoma cells there is actually a smaller subset that seems to be doing all of the multiplying. For example, you can put regular neuroblastoma cells into a mouse and it won't grow neuroblastoma. However, you put one of these tumor initiating cells in and they grow beautifully. While we don't know that they are true stem cells, we do know that they can grow neuroblastoma really well. So, if we can stop these cells we can keep the tumors from multiplying. Thses are the ones we have to learn to kill to prevent relapse. This is the bee hive hypothesis. You can kill all the bees you want but if you don't kill the queen the hive will keep coming back. It is only when you kill the queen that the hive will die.
Well, I had best be off. While you all are perky and chipper it is hours past my bedtime. My brain needs resting. There is much more to come.
Purpose is just that way.
I guess the best place to start is with where I am. The convention is being held at the Makuhari Messe International Conference Hall in Chiba, Japan. It is probably the largest convention center that I have eve witnessed. There are about 15 conference halls in 3 different buildings. Each of this buildings dwarfs the professional baseball stadium next door - by about 5 times. I have not heard the numbers yet but I assume that there are probably greater than about 500 people participating. Sitting in the lobby I saw the faces of all of those people that we have seen gracing the top of just about every neuroblastoma medical article ever written. Sure, I have seen all of the usual suspects from the states - Maris, Cohn, Matthay, Seeger, Reynolds, Twist, Parks (to name a few) - but I am also seeing many of the international names as well. The truly neat thing about this conference compared to the one that I attended in Los Angeles two years ago is the number of foreign investigators. There is a much larger population of foreign researchers at this conference. I think this is very important because we get to see much of the research - in action - that we were not aware of in the states. This means many more opportunities for collaboration and new connections. Frankly, that is what excites me. You see, the North American group is pretty tight nit and even they do not know all of what is happening in a similar lab across the state - much less the country. Now look at the rest of the world. With language and physical barriers it is rare that this group gets to meet, discuss and, hopefully, have revelations together.
So, this afternoon I sit in a workshop on "The Neuroblastoma Stem Cell?" (3 hours worth). This workshop is aimed at presenting all of the work that has been done on neuroblastoma stem cells all over the world to try and discover what we really know. Do they exist? Does it matter if we do? What do we know that we can take advantage of?
David Kaplin from Sick Kids in Toronto has given the overview. The reason that everyone thinks neuroblastoma stem cells are so important is because of the whole theory of how neuroblastoma tumor cells come to be, grow, and more importantly - how they die.. What they have discovered is that there are indeed tumor initiating cells. This subset of cells is really good at growing neuroblastoma. Believe it or not - many neuroblastoma cells don't have this characteristic. While there are a lot of neuroblastoma cells there is actually a smaller subset that seems to be doing all of the multiplying. For example, you can put regular neuroblastoma cells into a mouse and it won't grow neuroblastoma. However, you put one of these tumor initiating cells in and they grow beautifully. While we don't know that they are true stem cells, we do know that they can grow neuroblastoma really well. So, if we can stop these cells we can keep the tumors from multiplying. Thses are the ones we have to learn to kill to prevent relapse. This is the bee hive hypothesis. You can kill all the bees you want but if you don't kill the queen the hive will keep coming back. It is only when you kill the queen that the hive will die.
Well, I had best be off. While you all are perky and chipper it is hours past my bedtime. My brain needs resting. There is much more to come.
Purpose is just that way.
Tuesday, May 20, 2008
I have arrived
Well, I just checked in to the hotel. It is about 6:00 PM in Japan which is roughly 4:00 AM in Fort Worth. Oh well, there will be plenty of time to sleep later. I am actually getting ready to head out to dinner with some of the people from the conference but I wanted to check in to say hello. I left yesterday morning in a pretty big rush.
Honestly, I had two major issues leaving town. First, I really was having a tough time saying good bye to the kiddos. I missed them unbelievably and I wasn't even out the door. Secondly, I was supposed to be taking this trip with David, another father of a child with neuroblastoma. David and I were good friends and I was really looking forward to the trip. Plus, I was going to count on him to keep me out of trouble. Unfortunately, In a last minute snafu he was not able to make it on the trip. That left me all by my lonesome.
Well, almost. I then met little David and little David agreed to go with me to keep me company and out of trouble when bi David could not. Truth be known little David and I have had a blast. When I get a chance I will catch you up on some of our adventures. He got a little drunk on the plane. What can you say. Good ol' David!
Unfortunately, now I have to run. It is time for dinner with little David so we can get fueled up for purpose. We have a lot to learn.
Subscribe to:
Posts (Atom)